- Congenital Heart Defects are the #1 birth defect and are the #1 cause of birth defect related deaths. Source: March of Dimes
- About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation
- Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation
- This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
- Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation
- Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. Source: March of Dimes
- It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications. Source: March of Dimes
Sunday, June 7, 2009
What's Goin' On?
Life is more and more interesting every day. Amelia is like a new little person each day. She is just about sitting up on her own, laughing a ton, smiling all the time, eating wonderfully and just being an overall happy baby. She really is so fun. She had a cardiologist visit on Thursday, June 4, which went really well. We were considering switching cardiologists, but decided we really like Dr. Turner. He is really good with Amelia and just is a nice guy. We were just really sick of Children's Hospital, so we felt like we should switch cardiologists, too. We can see Dr. Turner out at Huron Valley in Commerce, which is SO much better than Children's. I took Amelia on my own to her appointment and it is easy - well as easy as it could be to take a 6 month old, a car seat, a stroller, a diaper bag, etc. etc. They weighed Amelia there and she was 16 pounds, 12 ounces and 26.5 inches long, which is CRAZY because she was 15 pounds, 8 ounces just 13 days prior at her 6 month checkup! She really is doing so well! Her xray showed some issues with her diaphragm - Dr. Turner thinks the surgeon may have knicked her phrenic nerve in addition to the vocal cord nerve during the open heart surgery. Since she is not having any issues (i.e. breathing or eating diffuculty) we are just going to let it be. It was a little scary because we were waiting for the 'green light' from the radiologist that the xrays were good, and while we were waiting we heard a page for Dr. Turner. It just turned out that since they had never xrayed Amelia at Huron Valley, they were alarmed by the atelactasis (congestion/collapse) in her left lung as well as the "bubble" in her stomach. She's always had this in her xrays since surgery. Dr. Turner thinks that because her diaphragm is not fully expanding when she breathes, that her lungs are not getting completely filled. This is why she still has the atelactasis over 2 months after surgery. He said he will look at it in November (yes, NOVEMBER, we don't have to go back for 5 months!) and if it is still there, we will do an xray of her breathing and see what is going on.
Amelia then had an echocardiogram, which looked good! She still has two small holes (an ASD and VSD) but Dr. Turner feels that as her heart grows, these holes will go away. She has a small amount of mitral valve regurgitation (leakage) but Dr. Turner said "my mitral valve leaks more than that and I am fine!" So all in all, it was a good visit. The other good news is that her vocal cord is definitely improving! We haven't had any more tests done (not until November 6 at U of M) but she has a GREAT voice and she was crying today (darn gas!) and I said to John, "listen, you can hear her cry" and he was like "oh my gosh, I didn't even notice!" She has her full cry back. She doesn't cry very often, so we haven't really had an opportunity to assess any improvement. She is saying "dada" now - which is so cute. I know secretly I wish she would have said "mama" first, but she LOVES her daddy! She has babbled "mamamamama" and "nanananana" as well as "bababababa", but she actually looked at John and said "hi-da. dada" Like "hi, dad!"
Amelia really is a beautiful, wonderful baby. I can tell she is going to be so smart and do great things with her life. She loves to evaluate things and always has this "inquisitive" look on her face. While the technician was doing the echocardiogram on Thursday, Amelia was just staring at the screen like she was remembering everything she saw - I swear she would've been taking notes if she could write, and speak, and had a notepad and pen... : )
John, Owen and I are all doing well, too! We will celebrate Owen's 5th birthday on Wednesday, June 10! We can't believe our little guy is 5 years old! He is such a cute pooch!
John and I will be celebrating our 5 year anniversary on Friday, June 12. It's crazy that it has been 5 years already. Time really has flown by. If you would have asked me 5 years ago where my life would be in 5 years, I would not have imagined it would be anything like it is - it is actually better than I ever could have imagined. I absolutely love my life right now. I love being a mom, I love my dog, I love my husband - life is good. I thank God every single day that he has blessed me with this life.
Amelia then had an echocardiogram, which looked good! She still has two small holes (an ASD and VSD) but Dr. Turner feels that as her heart grows, these holes will go away. She has a small amount of mitral valve regurgitation (leakage) but Dr. Turner said "my mitral valve leaks more than that and I am fine!" So all in all, it was a good visit. The other good news is that her vocal cord is definitely improving! We haven't had any more tests done (not until November 6 at U of M) but she has a GREAT voice and she was crying today (darn gas!) and I said to John, "listen, you can hear her cry" and he was like "oh my gosh, I didn't even notice!" She has her full cry back. She doesn't cry very often, so we haven't really had an opportunity to assess any improvement. She is saying "dada" now - which is so cute. I know secretly I wish she would have said "mama" first, but she LOVES her daddy! She has babbled "mamamamama" and "nanananana" as well as "bababababa", but she actually looked at John and said "hi-da. dada" Like "hi, dad!"
Amelia really is a beautiful, wonderful baby. I can tell she is going to be so smart and do great things with her life. She loves to evaluate things and always has this "inquisitive" look on her face. While the technician was doing the echocardiogram on Thursday, Amelia was just staring at the screen like she was remembering everything she saw - I swear she would've been taking notes if she could write, and speak, and had a notepad and pen... : )
John, Owen and I are all doing well, too! We will celebrate Owen's 5th birthday on Wednesday, June 10! We can't believe our little guy is 5 years old! He is such a cute pooch!
John and I will be celebrating our 5 year anniversary on Friday, June 12. It's crazy that it has been 5 years already. Time really has flown by. If you would have asked me 5 years ago where my life would be in 5 years, I would not have imagined it would be anything like it is - it is actually better than I ever could have imagined. I absolutely love my life right now. I love being a mom, I love my dog, I love my husband - life is good. I thank God every single day that he has blessed me with this life.
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